For Her Sake Or For Mine?

World Alzheimer’s Day – 2017

I haven’t been blogging much lately. It’s not because I haven’t wanted to. I have. And generally, I still have a lot to say.

But my brain isn’t functioning too well, and it gets in the way of getting the thoughts (and feelings) from my brain onto my screen. I start plenty of posts but they simply don’t end up saying what I want. And so I don’t even start to write. It’s easier that way because as a writer, there isn’t much worse than not being able to get the words out. Don’t mistake this as writer’s block. It’s not.

The problem I have is called brain fog (aka cognitive dysfunction) and I currently have two chronic medical conditions which make this a daily reality. Then there are several medications I take which contribute to the severity of my brain fog. And let me just say for those who have never had it, that the term ‘brain fog’ drastically underestimates the issue.

It was only a few days ago that I tempted the derision of another by raising the issue with my doctor (again). My brain fog has been so bad lately that I feared some type of permanent brain injury had somehow taken place, or perhaps even early-onset Alzheimer’s Disease. (There’s enough Alzheimer’s Disease in my family to know that it could well be a reality for me some time ahead).

My doctor told me to take a multivitamin. There is a lot I could say about her response, but I won’t because well, this post isn’t about her.

Regular (yes, I realise there has to be something to read to become regular) readers will remember that my mother lives with Alzheimer’s Disease. You can read previous posts that address this aspect of her, and my life here and here, as a starter. What’s important to know is that World Alzheimer’s Day is important to me. It’s right up there as far as awareness days go. Not just because of my mother’s current fight, but also the past fights of an uncle and my maternal grandmother, and of course, that one day this may well be my fight too.

Mum has been living in a secure facility directed at dementia care for nine months now. In that time, I have witnessed her fight become more intense. I have watched as she now struggles to recognise anyone but me. Sometimes she knows I am her daughter, but other times she is adamant I’m not her daughter, and that instead, I am a long-standing friend. Then other times I’m not altogether sure just who she thinks I am, except it is clear that I am of meaning to her. Only a couple of times have I got the sense that she had no idea who I am. Yes, all of that leaves me sad. I am grieving for someone who stands in front of me.

All of that leaves me thinking about why I do what I do?

Why do I spend time with Mum most days, often while I am in a great deal of pain, and often when brain fog is leaving me struggling to even speak with her (and/or the staff)?. Why is it important to me to be there for her, regardless of what physical, emotional or mental toll that has on me? Or simply when I could be doing something else?

I am the only person in her life that she actually recognises now. I find this terribly hard. Each time I have the realisation that she doesn’t recognise someone, it hurts. Each time she tells me she doesn’t remember being married, or the man she was married to, it hurts. I find that one particularly painful, simply because she was married for 53 years (to my Dad) and her brain has shut out all those memories.

But I have a unique opportunity to attempt to keep those memories alive, whether that maybe in telling her about aspects of her life, or simply keeping the memories alive in me. I can do that for her. And I can be her voice in a world she finds increasingly bewildering.

Imagine if you knew only one person. That person would be so important to us, and we would probably rely on them a great deal. I would hate for my mother to not have that one person, and so I do what I do for her sake. For her sake, to have a person in her life.

Realistically though, I know there will come a time when she no longer recognises me, but I am determined to be there anyway. Determined to be that person for her, even if/when she isn’t aware.

The truth is though, that I do what I do for me too. A year or so ago I would have told you that I am there for Mum for the sake of my late father. Doing what I thought he would want. But I know now that I also do it for my sake.

I have never had a good relationship with Mum. Actually, we now have the best relationship we’ve ever had. This is my opportunity to have a relationship with my mother. It might not be the sort you would hope for, but we have a connection. It is unique, it is largely one-sided, but it is something I have never had.

I’m not making up for lost time, but rather simply having what I am fortunate enough to be given at this time. Perhaps neither of us were ready for a relationship before, but now we both benefit. It is for her sake, and for mine.

And with that note, I will take my multivitamin (because I’m just a little scared not to).

Thanks for reading

 

Cate

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When The Mind Breaks

Rock-a-by baby On the tree top,
When the wind blows The cradle will rock.
When the bough breaks, The cradle will fall,
And down will fall baby Cradle and all.
                                                    – Mother Goose, c.1765

A nursery rhyme that has always struck me as (just a little) scary. Who puts a baby in a cradle, and then in a tree? What do you expect? The baby IS going to fall.

Right now (and actually for a long while previously), my life is dominated by minds that have perhaps been put in a metaphorical tree, the bough has broken and so has the mind.

Firstly, the onset and continuing existence of mental illness in my own life. Mental illness has been very obvious for around twenty years now, although thankfully (for now) it’s not quite the crisis that it has been previously. There’s always the possibility, though that the branch may break again. With the diagnoses and history I carry, I would be a fool to deny that possibility.

But now, I’m living the day-to-day reality of caring for my mother who has Alzheimer’s Disease. It is different from my own broken mind experience yet there are some very real similarities. Sadly, at this stage of medical knowledge, there is no light at the end of the tunnel with Alzheimer’s. Rather it is getting steadily worse and will continue to do so. People don’t survive Alzheimer’s. Not yet, anyway.

That breaking of minds is something I could write about endlessly. Both my own mind, and more recently my Mother’s. But it’s not where my thinking is today. Rather, I’m thinking about what is left when the mind has broken. That thinking comes from the image below, one I came across yesterday on a great Facebook page, Alzheimer’s Sucks – Memories for Joe Hennington. As an aside, I can tell you that Alzheimer’s does indeed suck, so that immediately tells me this page is a good one. It is worth a visit.

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Image credit: Permission to reproduce obtained from FB: Alzheimer’s Sucks – Memories for Joe Hennington

Let me say from the outset, that it is not my intention to conclude whether or not the message contained in this image is correct. I don’t know the answer to that, and I wonder whether anyone really knows. I share it because it made me think, and so I want to discuss it. To hopefully at least start to sort out my own thinking, and maybe find a little of what others think.

This image stopped me in my tracks. “The heart holds what the mind can not“.

I had seen a similar statement before but perhaps because of where I am at with my mother’s Alzheimer’s journey, it really made me ask yesterday:

“When the mind breaks, does the heart step in and protect what really matters (what the mind held)?

Is what was loved, sustained?”

Yes, that is what I want to know. I know the easy way to look at this. I can tell myself, “yes, my mother still loves me now and will continue to do so when she no longer knows me“. That is, of course, what we all want to believe.

And what about with severe mental illness? When my mind was so terribly broken (in an admittedly different way) and I didn’t want to know my family, I suspect they might have wondered “did she still love us?” Clearly, there were times when my actions and words indicated otherwise.

I can remember my then-husband wondering “do you still love me?” Such a question came at a time when he was having to watch me continuously, primarily because the mental health services were simply not available and someone had to make sure that I stayed alive and ate something. I hated it (and I’m sure he did too). I reacted in such a way that he must really have wondered. It probably appeared that I hated him. Perhaps I did.

I don’t think I had the capability to love him (or anyone) at that time. My mind was very much broken and was fighting for survival in such a way that I wonder if love was even possible. If you could magically take away the mental illness then, of course, I would say then that I loved him. But magic isn’t real life, is it?

My mother’s Alzheimer’s Disease is different. She’s not having to fight me for her survival, in the way that I had fought my husband. There is also not some hope that we will get her back, as she was. The mother I knew, has largely faded. I don’t buy the train of thought that the person with dementia has already died and that we are simply left with her body. But that’s a whole other post so I won’t go there right now.

A few days ago Mum and I were in her room looking at something that she has always loved. I said something about it, and I saw her looking at it as if she had never seen it before. Then she looked to me and clearly wanted some explanation. It was an object rather than a person but I found it startling because it was an object she had loved. Only in the last few weeks, she had referred to it with affection, but now she had no connection to it.

And so I wonder, what about when it is a person. When it is me? When the time comes that she doesn’t recognise me, will her heart still hold what the mind has lost? Will she still love me?

I want to believe that she will, even though she won’t even be able to communicate it. Who wouldn’t want to believe this? But I suspect that it’s not quite that easy. Maybe that’s the glass half-full person I am. I don’t know.

Perhaps too, it comes from my own broken mind. I have struggled to believe my mother loved me for most of my life. We haven’t had an easy relationship. It’s difficult for me to believe that her love will be sustained when I’ve spent nearly fifty years doubting the existence of that love.

What matters is that I will keep being there for my mother, even if that love has gone. More so, perhaps I need to turn all of this around. What I need to know is that she will still know that I love her.

And in terms of my own broken mind journey, perhaps what really matters is whether I could still somehow comprehend love from my husband and my family. Actually, I’m pretty sure that I couldn’t and perhaps that was part of the problem. I’m really not convinced that my heart could hold what the mind had lost.

I suspect these are questions for which there will perhaps never be adequate answers (for me anyway). Something I perhaps have to accept as it is, without understanding.

What do you think? When the mind breaks, what happens to what the heart held? But please don’t tell me that of course, my mother loves me. If you do, I will know that you have missed my point.

“You’re so beautiful,” said Alice. “I’m afraid of looking at you and not knowing who you are.”
“I think that even if you don’t know who I am someday, you’ll still know that I love you.”
“What if I see you, and I don’t know that you’re my daughter, and I don’t know that you love me?”
“Then, I’ll tell you that I do, and you’ll believe me.”

— Lisa Genova (Still Alice)

Thanks for reading

 

Cate

My Saddest Day…

The Saddest Day That a Daughter Has To Bear. That’s right. Today is my saddest day.

I’ve been there with the death of a parent, and yes, that was tough. My father died suddenly nearly six years ago. He wasn’t well, but no one expected he would die. I pounded on my father’s chest doing CPR for twenty minutes. It was just fortunate that I had learnt CPR about 25 years earlier. With the help of Emergency Services on the phone, I roughly knew what I was doing. Enough, anyway.

I felt it as one of my father’s ribs cracked beneath my pressure. I remember thinking he would be grumpy with me afterwards with his broken rib. I didn’t stop to think that my efforts to revive him wouldn’t work. I guess I couldn’t afford to think that he might die.

By the twenty minute mark I was so exhausted, and every muscle in my body ached. When you see actors doing CPR on the television, you don’t realise that actually it takes an enormous amount of energy and strength. But then they’re not really doing it. Are they?

I was so exhausted I had to stop. Unthinkable really, but I simply had not an ounce of energy left in me. I had done long-distance running and knew what that point of utter exhaustion felt like, but this was so much different and so much more. Fortunately, it was at the very minute the first paramedic came through the door. You can draw your own conclusions about how that happened right at the very moment I had to stop. The paramedic carried on for another twenty minutes. Beyond the call, really. My Dad had gone and my mother and I watched and waited for the funeral director to come. This was a new stage in our lives.

Losing my father was terribly hard. He was my best friend, hero and someone who had believed in me every step of my life. Now he was gone. I carry a diagnosis of fibromyalgia now as a reminder of the trauma, both physical and emotional, that I bore that day.

But today was quite different. Today I was ‘losing’ my mother to the Alzheimer’s Disease which has increasingly swallowed her up. She hasn’t died. I guess I haven’t really lost her. But then, I know that I have. There is no coming back from this.

Today I moved my mother into a secure (read locked!) dementia care unit. It was the saddest moment when she said in a pleading voice “you’re not going, are you?”. I had done my best to make her new room familiar, I had walked her into her new home and now it was time for me to leave. Time to let the staff take care of her.

Mum hadn’t known where we were going today. To have told her would have been wasted. We were simply going for a walk (her new home is on the same property as the old). When we got to her new room, she thought it was my room. She looked around and recognised a few of her things. Theo, the teddy bear she had once made was on her bed, as was a cushion she had embroidered back before she was married. These were her things. This was her room.

I’m no expert on Alzheimer’s Disease but perhaps since my father’s death, I have become somewhat of an expert on my mother. She’s scarcely the woman I knew. She’s barely the woman who raised me.

We used to argue day in day out, but that tension is gone. Now she depends on me for her life. When I’m not visiting, she spends hours looking for me. I have become her link to life, because while physically she’s holding on, mentally she is a shell. And today I took that shell out of her semi-familiar surroundings today and gave her a totally unfamiliar new home.

I came home and I cried. Cried for the mother I have lost. Actually, I never thought that I would cry for her. We just didn’t have that kind of relationship. Actually, we barely had any relationship. It’s not that I didn’t care, or that she didn’t care. It’s just we had never found a way to get along.

One day, my mother will die and I guess I will cry again. But the woman I knew for fifty plus years has almost totally gone. Simply leaving a shell. And that makes this my saddest day.

Thanks for reading

 

Cate

 

 

Human 2 Human

Relationships with other humans have to be one of the most difficult and complex aspects of life. They are for me anyway, and there have been a few issues which have reared their ugly head for me in the past few days.

I know that friendships, family connections and intimate relationships are really hard for me and now days I am inclined to pull back from all of them.

With one failed marriage behind me, along with a string of failed relationships, I am alone and pretty certain that I will remain alone. I believe now that I not supposed to have  someone by my side. I have never believed that there is a soul mate for everyone, nor will everyone find their soul mate. Actually,I suspect my soul-mate might just have been and gone.  And sometimes circumstances just get in the way and block the way for what might have been true love.

On the other hand, it was some years ago now that I also came to the conclusion that close friendships were perhaps something I would be best to avoid. You may call it sad but I call it safe. After being let down by a number of friendships, I made a specific decision that friendships I might have been able to rely on were no longer worth it. Yes, I do have friends but not many and I try hard not to rely too much on them. I am inclined probably too much to withdraw rather than depend.

And then there is family. I have been fortunate to date with my family connections. Maybe they didn’t always understand me or my needs, but they did seem to love me. I think they still love me, but their availability  for me to rely on them is perhaps changing.

I know that my Borderline Personality Disorder (BPD) plays a part in how I relate to other humans. I’d like to say it isn’t part of the story. I’d like to say that I have it ‘under control’. But it is part of me, part of my personality if you like, and no matter how many ways I learn to control or even recover, I know that it will always be there.

An article I read highlighted for me some of the issues that float in and out of importance as issues for me with BPD:

“Most patients named gaining control over emotions, mood swings and negative thoughts, followed by reduction of municipality, self-harm and other destructive behavior and improving self-acceptance and self-confidence. However, improving relationships and improvement of social participation, social competence and job situation has been mentioned as important.”

It speaks of the issues important to patients with BPD in the treatment they need. But I use it as it easily highlights in a paragraph issues I deal with when connecting Human 2 Human.

It’s hard. It’s constantly hard, and with those issues at play perhaps it is easier to understand why I choose so often to withdraw.

This week someone important to me said:

“I don’t care…” [about you]

Ouch! Actually, it was more than “ouch”. It was fuck! Under my breath, of course.

The rest of their words no longer mattered. I had heard that they “don’t care” I didn’t matter anymore. They possibly weren’t even aware of having said it, but it was loud and clear. Maybe this person was someone I could no longer rely on (for any number of reasons). Maybe this was connected to my having BPD. Maybe I was too much. Maybe I had misinterpreted what another person might have taken differently. But then maybe it was simply about their issues not connected to me. It hurt anyway.

Do you see why Human 2 Human is hard?

Another relationship came up on my Human 2 Human radar. I know my mother’s Alzheimer’s Disease is not about me, but how I respond to something that is ever-changing is totally about me. I can’t escape this one.

In a conversation with my mother, I discovered that her memory has gone so much that she appears to know nothing of my life beyond my name and that I am her daughter (I am thankful that she still knows this). She also appears to know nothing of her life when I have been a part of it. Of course, I knew that this was coming some day but that day had arrived and it cut deep. My own mother doesn’t know me. Maybe even I don’t exist for my mother anymore.

My father passed on nearly six years ago, and it seems that while my mother sits in front of me, she is in some way gone too. I have heard the expression of grieving for someone who still lives, and that is even harder than it sounds. I feel like the wind has been blown out of me.

My parents have always been very important to me, although I admit that my mother and I have never been close, never even been friends. The tension between us has gone now. Something I can’t totally explain. But maybe she has gone too.

Perhaps my feeling of loss this week connects to my BPD. I know there will be a connection because there always is. It’s just that I have yet to work it out, to be able to put it into words. Meantime it hurts. Both instances I have described here. I need to hide away and lick my wounds.

I want the luxury of time with my therapist again, but I have no therapist anymore.

All I can do is write. I don’t claim to have any answers. Just questions. I hope that what I choose to write and share with you makes even the tiniest ounce of sense. I suspect it will make more sense with others who travel with a Borderline mind.

Thanks for reading

 

Cate

 

Me And Mum

World Alzheimer’s Day – 21 September

Image credit: courtesy of digitalart at FreeDigitalPhotos.net
Image credit: courtesy of digitalart at FreeDigitalPhotos.net

I hadn’t intended to post again so soon after my last post, but World Alzheimer’s Day today is too good an opportunity to say let’s support the people in our communities who live with Alzheimer’s. People who have the disease, people who support those with the disease, and people who are employed in working with both groups of people.

In writing about Alzheimer’s and my family’s journey it is really important to me that I don’t take advantage of my mother’s plight. She deserves her privacy, something which she has always held tightly to. She doesn’t deserve to be some kind of joke. The struggle she lives with is real, but she is also real. She has feelings. Part of my task in supporting her is to protect those feelings, even though she might not be able to express or even understand them.

This post comes from my own reactions to my mother’s illness. I have tried to write from a perspective of my journey, rather than my mother’s. I hope that in doing so, I have preserved at least some of Mum’s right to privacy.

It’s funny how things happen. I think I would be pretty much the last person my mother expected or even wanted, to be there for her as she traverses her last years – with Alzheimer’s Disease.

“The phrase ‘Love one another’ is so wise. By loving one another, we invest in each other and in ourselves. Perhaps someday, when we need someone to care for us, it may not come from the person we expect, but from the person we least expect… [ someone] whose love for us has assigned them to the honorable, yet dangerous position of caregiver.”

Peggi Speers, The Inspired Caregiver: Finding Joy While Caring for Those You Love

Mum and I never got on. Not when I was a child and not for most of my adult life. It might seem harsh but the reality is that I think Mum and I tolerated each other for the sake of my (now late) father. I always got on great with Dad, but Mum didn’t appear to understand me and I didn’t understand her. I fully expected that when she was old, we would simply go our own ways.

My father died suddenly nearly six years ago. My parents had been temporarily living with me (after they lost their home in the Christchurch 2010/11 earthquakes). I remember the night after Dad’s funeral, I looked across the room at Mum and wondered how we would go from here. Mum hadn’t been diagnosed with Alzheimer’s at that stage, but both Dad and I were clear that she was showing symptoms.

You see, Alzheimer’s runs in my family. My grandmother died of it, as did one of my uncles more recently. Earlier generations possibly bore it’s burden too. I have known it for most of my life, being only about ten when my grandmother was moved into residential care back in the late 1970’s.

Sadly, it’s something we have grown to expect. Mum never talked about this family heritage, but I’m sure she was probably quietly terrified. Frankly, I’m quietly terrified of it myself. But I’ll face that when I get there. My fear is not the focus for today.

It wasn’t long after Dad died that I got a very clear sense that he would want me to ‘be there’ for Mum. People have since told me “don’t be silly, he wouldn’t put that burden on you” but that’s not the way I saw it. To me, it was just one last thing I could do for him. I never stopped to see it as some type of burden. It was just the way it was going to be. Strangely, doing it for Mum never came into it back then. Supporting her would be definitely something I did for my father. Perhaps that’s just the way I needed to see it back then.

Mum was finally diagnosed about two years ago, but symptoms were obvious to those of us who were with her regularly, about six years earlier. And I’ve been learning ever since. I thought I knew the disease, but I really didn’t know anything until I learnt to live with it daily. There are new lessons each day.

Our relationship has changed enormously. It’s still not what I would call a typical close mother-daughter relationship. It never will be. Our relationship centres around her, and what she needs. My needs don’t really come into it. Some days that is really hard. Some days when I’m not well myself I want to scream “what about me?”. But mostly it’s okay. While Mum isn’t able to acknowledge it, I know that she needs me to prioritise her. This is her time now.

Mum needs me. She is living in a rest home, so yes, her basic needs are met. But I see her most days. I am clear that when I am not there, the staff take good care of her, but they are clear that Mum needs (and wants) my presence.

I’m the one that meets all Mum’s other needs. It might be the little things that no one would ever think of, or maybe bigger things like making decisions for her. I’m the one that notices the dirt on her shoes and stops to scrub it off just before taking her out to church. Maybe the dirt doesn’t matter, but it would have mattered to her… and so, now it matters to me.

Mum never appears to have any difficulty knowing who I am. She’s never once hesitated over my name and has no problem telling anyone who will listen that I am her daughter. That said, there are times when it’s quite clear to me that she is talking to me thinking I am my father. Other times I am a mystery third person, who she was eventually able to reveal to me was her sister (she never had a sister!).

I know that Mum has a great deal of difficulty knowing who most other people are. She’s confusing names or having to ask me who someone is. I admit that I try to keep the family names alive in her mind. I talk about my brothers (by name), about her grandchildren (again by name). I talk about my father because I can’t bear to think that she might forget the man she was married to for 53 years.

Maybe I do all of that for my own sake. Maybe I make decisions for her in such a way that will save me from having to see her suffer. I don’t know if it’s that I don’t want her to suffer, or that I can’t bear her suffering. Does that make sense? The two things are different to me.

Alzheimer’s Disease is a terribly cruel illness. I’m not the first person to write that. I see it’s cruelty daily as it robs little pieces of my mother.

I see the pictures in many Alzheimer’s publications of two brains side-by-side. On the left is a ‘normal’ brain and on the right is the smaller ‘Alzheimer’s’ brain. I wonder what my mother’s brain looks like now. How much has it shrunk? And for how long it can go on as it is? I don’t know.

The future of the journey which Mum and I are on is unknown. There is so much that is unknown. Each day, I don’t know what it will contain. Even though I already see my mother struggle so much, I know the struggle will only get worse. It’s just a matter of time. Will it be today? Or some time ahead?

What I do know, is that I have a remarkable opportunity to serve a woman, my mother, in her final days. What an honour. Seriously. I never thought I would say that, but Mum’s willingness to let me be there for her is a gift.

I read that “being a mother is about protecting your children from every conceivable thing that might cause them hurt”.  I’m not a mother myself but I now see my role as protecting my mother from everything that might cause her hurt. Sometimes I can achieve that but sometimes I can’t. At least I can try.

By choosing to look at our journey in these ways makes it bearable for me. I dearly hope that I am somehow making it bearable for Mum.

Thanks for reading

 

Cate

 

Other Posts You Might Be Interested In

Bewildered

Never Say Never

 

Bewildered

Bewildered was reflected in my eyes. I hadn’t seen it before, but there was something devastatingly familiar in that look. I couldn’t turn away from it.

I had been Bewildered in times past. It came as a symptom often not recognised, from too many anti-depressants, benzodiazepines, antipsychotics and even too much ECT (yes, it is possible to have too much). Those left me with little idea of the world around me. I didn’t know the people around me. I didn’t know the world around me. I was a little bit scared but mostly I didn’t care.

The Bewildered now reflected in my eyes was mostly not there to reflect mine in the days I needed it. I was mostly alone. It’s not that they didn’t care. I had just pushed away anyone who cared. I had moved away to places no one knew me. Those that cared were few in number. Well, that’s what Bewildered wanted me to believe.

Actually many people, admittedly at a distance, cared. Actually, many people, family and friends, wanted to care, but I couldn’t see it. Perhaps it was the psychosis, the depression or perhaps it was the drugs… they wanted me to think I was alone. Actually, Alone was the last thing I needed. Alone would kill me if I let it.

It’s what made me think when I saw Bewildered staring back at me last night. Alone is the last thing that Bewilderment needs. It’s not that it would kill them. Well, not yet and not in the way it threatened to kill me.

It is easier to stay away. Because it’s difficult. What do I say? How do I respond to Bewildered’s strange statements? How do I stay, when Bewildered seems to push me away?

I’m lucky in a way. I have my Grandfather’s example to follow. He wasn’t alive by the time I faced my Bewildered, but I know what he would have done because I’d seen him do it before. He would stare Bewildered straight in the face, and say, “I’m not leaving you”. And he didn’t.

Whatever Bewildered you find reflected in your eyes, I challenge you to stare them straight back in the face and say “I’m not leaving you.” It seems so small, but maybe if it can take out a little of the fear that Bewildered faces alone, it has to be worth it. It will probably be difficult, but still worth it.

“Peace. It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of these things and still be calm in your heart.”

 – Unknown

Peace is something that even the Bewildered deserve. No matter where that Bewildered is sourced, I believe that I can help someone Bewildered find even just a little of their own peace just by being willing to let that Bewildered be reflected back in my eyes. In that, they are not alone.

Thanks for reading

Cate

 

Never Say Never

I did say ‘never’. More than once. Actually I said it repeatedly for about 20 years. That’s a long time to say ‘never’ but I was sure of myself. I was sure that I never wanted to do this again. I’d been, got burnt several times, and wasn’t going to go there ever again.

About six months ago I had my first inkling that perhaps I had said ‘never’ with a little too much certainty. But I had never pictured myself in this situation, ever. While I was still saying ‘never’, I was starting to realise that I might have to change my mind sometime in the future.

I can tell you that I hate that! Having been adamant for so long, having been sure that this would never happen, and now because of a number of decisions I had made over recent years, I knew that I should never have said ‘never’. Never say never, Cate!

I have shared in past posts that my mother has Alzheimer’s Disease. It’s a cruel disease. Everyone says that but I had little idea just how cruel it was. I had seen my grandmother’s journey through Alzheimer’s. An uncle’s journey more recently. And one thing that’s sure is that I’m nowhere near the end of this Alzheimer’s journey yet. I know now that contrary to past thinking, it’s a much worse experience for my mother than it will ever be for me.

I remember being told “at least they don’t know what is happening to them”. That was a somewhat comforting thought. Just yesterday someone told me “they’re really already dead” (ouch!). But research has now found that patients do know. It’s just they don’t know what they can do about it. It’s a good reminder to me that no matter how hard this is for me, it is much worse for my mother. That’s enough for me to never say ‘never’.

For all of her life, my mother has gone to church. It has been central to her life as a child and as an adult. She was married to a minister. Now it continues to be a key aspect of her life, although she is more limited in the extent of her church activities. Apart from perhaps when she has been in hospital (rarely) I can’t think of a time when she didn’t go to church on Sunday.

When mum had to give up her driver’s licence and so couldn’t get herself to church, we set up a system where another brother (who went to the same church) would pick her up and take her to church. I would be waiting outside church at the end of the service to take mum home. Many times I have been invited to go to church with her, but I was saying ‘never’… quite firmly. I had absolutely no intention of going. But the system we had set up worked.

For a big chunk of my life, I had gone to church. I had grown up in a minister’s family so church was central to our family activities. As an adult, I had continued to go to church.

Several things happened in my teens and twenties. They dulled my enthusiasm, although I never said anything and I kept up my participation. When I was first diagnosed with a mental illness, in my late 20’s, a number of statements made to me by a few unwise people, left me concluding that church was no longer the place for me. I felt judged, and I felt uncared for. To the extreme perhaps, people who had hurt and abused me were somewhat more important to some church people than I was. My needs for safety and protection were seemingly unimportant. My experience was that church was not the compassionate and accepting place they said it was.

And so I stopped going to church… about 20 years ago.

Until now.

My thinking has driven me further away from the church. But just sometimes, it’s necessary to put that aside. My mother now needs someone to be with her when she goes to church, otherwise she probably wouldn’t be able to go for much longer.

I made a choice. I would go to church with her until the point where she can no longer go (with me).

Aside from my own beliefs and thoughts, I’m not ready to see mum unable to go to church. It is very important to her, even with her disease. For some reason that I don’t fully understand yet, I’m prepared to help her keep it in her life.

Ok, so I have only been once so far. There is little that has changed in 20 years, except some of the music. It wasn’t somewhere I felt comfortable, but my comfort was not what this exercise was about. I don’t call myself a Christian, and suspect that will continue. I didn’t agree with everything that was said. It is a middle-class church and I wondered where the inclusion of others was.

But I will be there, with her, again this Sunday. And the Sunday after. And for as long as Mum can make it.

This is about being there for my mother. Making sure that something so important to her remains in her life, and setting aside my own thinking, I hope, for her sake,  that we can keep doing this. You see, when we can’t keep going, a very large chunk of mum’s life will have been taken away by Alzheimer’s. And that will be tragic.

It’s going to be a hard road for me. But I am willing to do it, not because I love her but simply because I hate to see this disease swallow up someone’s life before it has to.

Thanks for reading

 

Cate

“looking at my reflection, in the window opposite, hollow and translucent, I see a woman disappearing. It would help if I looked like that in real life – if the more the disease advanced, the more ‘see-through’ I became until, eventually, I would be just a wisp of a ghost. How much more convenient it would be, how much easier for everyone, including me, if my body just melted away along with my mind. Then we’d all know where we were, literally and metaphysically.”

― Rowan Coleman, The Day We Met